Catfish

Oh my word...Catfish is on More4 at 10 pm. Record it just for the pleasure of being able to tell me to stop going on about it, ha ha! I give thanks for getting more talking and writing done about the freeholder thing yesterday and then getting some tea and just chilling with the wonderfully droll Coach Trip Brendan and 'celebrities', the sofa gripping gasp out loud roads on IRT Andes and then more laugh out loud fun on Come Dine with Me. Then I had one of my mini baths with Lushly goodness in and Alan Bennett read to me in bed...well he didn't really but I read some of his Untold Stories which I found in a charity shop on Thursday. I love the way he writes and because I know what his voice sounds like I kind of hear it like that in my head. I love being read to...and I actually like reading out loud. I used to read for a talking newspaper...much thanks for all these pleasures and memories too...

I promised myself I'm going to try to enjoy this weekend as much as possible, not get too stressed about serious stuff at all. Best of all I'd like some company and companionship...someone to give me a real hug maybe, someone really there just to hang out with, cook some food with, chat with... I'm so strong but I'm human you know? There's so much going on and it would be nice to have some time out!

I'm going to try not to fret or trouble myself with best or worse case scenarios regarding health issues or neighbours or the freeholder although someone did suggest he might send his heavies in to intimidate me which left me feeling very uncomfortable. I try not to dwell on the incredible vulnerability of many aspects of my living situation...and I would rather not be reminded. All the things that are most precious to you would probably be precious to me if I had them...and although I guess safety and support has always an element of illusion I would like a more of an illusion sometimes.

Thank you to everyone who wrote kindly and encouragingly yesterday. As Carole points out, the surgery they are talking about is major and the first time I heard of it (September 08) I cried because I didn't want it done...so it's kind of funny that it's become almost desirable to me now, don't you think? The reason it wasn't done was that after they found cancer elsewhere in my body they didn't think I had very long to live anyway. 'It' wasn't worth it, I wasn't worth it...take it how you will. So to still be here and still well enough to have them review and reconsider without even one full course of chemo is well...pretty astonishing and amazing in and of itself whatever else transpires...even if the next bunch of tests and scans show deterioration.

So think on chaps and chapesses...they may not have sussed out who, what or how yet but there are situations in which cancer does not behave as badly as it might. Let's hope they find out more about them, eh?

Even if they are able to operate, it's not a miracle cure of all my ills remember...I will still have cancer. I will still have only one kidney, and that still will be damaged. I will still have a bag. I will still have the stroke damage on my left hand side and numbness on my right that no one has been able to find the cause of. I'll still be billy no mates me lying in bed on a Saturday morning pretending to talk to people who are not there and wishing she had a 'real' life. I'm going to look into personality transplants...I wonder if I could get one on the National Health?

Fighting chance

When I wrote last night about not giving up the fight I wasn't referring to the cancer fight and it was only reading it again that I realised that you might think it was. I was talking about the fight(s) with the freeholder of the building where my flat regarding his obligations as such. Adequately lit communal areas and no running water that isn't from a tap would seem to anyone but him to be reasonable requests but he makes me (and anyone else who I get to back me up such as CAB, MP and Environmental Health) right to the wire every time. Legal proceedings are lengthy and expensive and he knows my resources of health and wealth are limited and I think he assumes I will give up one way or another sooner or later but over the last couple of days I have come to the decision that even though I prefer avoiding conflict and stress (and typing and phone calls!) and would prefer to devote my time to crafts and contemplation and blogging and watching TV...the fact that I am poor and in poor health actually makes justice even more important not less. The vulnerable rarely have a strong enough voice to have access to the same care and attention as those who are more able. It's not really about me (for I am able to 'rise above it'), or the people who come after who may or not have the wherewithal to kick ass) but about doing the right thing again and the right thing is to not give up the fight because it is about right. And not to fight with bitterness or anger because that is wrong. I have skills that can still be used I reckoned and if I die in the process well it's for a worthy cause...

Well anyway, the phone rang this morning and at first I thought the woman on the other end said she was 'Rhian' the solicitor I was speaking to yesterday and then I realised it was 'Karen' the urology nurse who I'd asked to send me another Luer lock connector (you don't need to know!). She was ringing to say she was sending me one and to say the MDT was reviewing my case. My case had been in the On the Way Out Tray for some while as you know til blessed Dr Galli got hold of it. When I was told last summer my primary bladder tumour had shrunk Rachel, my acupuncturist, (bless her too!) had said 'Ooh, maybe you can have it out then'. I'd not thought of it like that and I'd kind of scratched my chin and wondered. I mentioned it to Dr Galli and he was rather taken aback but agreed that as the reason they weren't going to was because they thought my cancer was spreading ferociously whereas it now seems to be static or in retreat it was a reasonable question. So he put it to the urology team and they said...well you know you might be right, come and have some more scans and checks and we'll have a chat. No chemo? I asked. No, we promise...no chemo she said. (For new readers this is not cos I'm chicken but because it actually tried to kill me!) Now I don't want to get over excited about this as we will have to see what transpires but if they could remove my bladder I would have a urostomy not a neprostomy. Now a urostomy is a chap like a colostomy...it is designed for you to carry on with a pretty normal life afterwards. You can, I'm crying at the thought, do wet things like proper baths and swimming! You don't have to have a wire rattling around in a sensitive organ and a tube that has become a holiday home for viruses. Can you imagine the luxury of that? What's that... you live with it every day? Have you any idea how fortunate you are? No I didn't either, ha ha! Seriously though, it may be the investigations prove it would not be possible or advisable but even so...are you getting this (especially you well people!)....after three years of 'nothing more can be done' people are talking about the fact that maybe it can...FFS wouldn't you be crying!!!

Warm up

First of all I give thanks this morning that I'm feeling better. Not a lot...but I like it (to paraphrase Mr Daniels). I have the kind of average hot/cold tired and aching feeling you get with an infection but that's pretty much a constant anyway, and the deep chill seems to have passed. I managed some ironing and important letter writing yesterday evening and I'm grateful that's done.

Today I'm going to lie in bed a while longer fantasising (correction: *creatively visualising* ha ha!) someone bringing me a cuppa and sitting on the bed and asking what I feel like doing today and how they can help... And me saying 'Well, you know what? I could really do with a bit of a rest...would you mind making me some breakfast?' And I can really feel them patting my hand and hear them saying 'Yeah, sure, no problem...what do you fancy?' And I can sense that amazing safe feeling of lying warm and snug and cosy knowing someone else is taking care of things... I can hear the clatter of pans, the bubbling water, the slicing of the crusty bread...I can smell the toast and taste the poached eggs! I give thanks for my vivid imagination, and so grateful that I am still capable of looking after myself so well, but sometimes...sometimes...well you know!

Anyway, I'm going to get up and go out and on a long slow bus ride. I don't feel especially keen but I'm going somewhere I should be able to get some tangible rewards and also it's training for that trip away I'm planning. That involves a long slow bus ride so I need to see how it feels when I'm feeling rough...in case I do when I travel there. If anyone's tempted to say ' Why don't you wait until you feel better?' please stop and think and don't!

Of course I won't travel if I feel absolutely awful but the usual day to day options for me revolve round a) day to day chores - cooking, housework, 'paperwork' etc. b) chores I've set myself - improve my flat and my soul, make pretty things for charity and so on and c) abandoning the tasks to simply be. All of the above usually involve discomfort, often pain, and all are ongoing in that even with good health and boundless energy they will never be 'done' but I do find it hard to let go of trying to do a) and b) 'first' - a) as if they are not kept up to date they might become too out of hand to manage at all and b) because they are pleasant and 'worthy' distractions from a)...and sometimes even c)!

Don't worry if you don't understand...don't worry and be extremely happy that you don't! A long 'death sentence' spent largely in solitary can be challenging for the spirit and mind but I have Kostas to empathise with me on that. You lot go and play, OK? But come back soon!

In time

Well, well, well. Take it as you will. Today I would like to express gratitude today for my illness, strange as that may seem. For the opportunity it has given me to get to know myself better and to love myself more, and for understanding better why others don't and minding so much less. And for opportunities to love them more, even if it's a challenge at times. I'm grateful for the time it has given me knowing that I have less time. For the time to think and learn and understand. My thought for the day has been 'think outside the box'...take any of those words to mean anything you care to as well! I've been applying it to the task I've set myself which is 'to do the right thing' and therein lie many minefields of interpretation as well! Take being 'helpful' for example...

Sometimes when people ask for our help it's more about them wanting to us to know they have asked than actually needing our assistance. Sometimes when we offer help it is more about us wanting to know that we have offered, and for them to know we have, than actually about assistance. Sometimes when people don't ask we don't know if we should offer and when they can't ask we don't know if they might have done if they could...I've been trying to separate thinking I'm doing the right thing from actually doing it so it doesn't get caught up with pride or self congratulation... And I realise I'm getting far too philosophical and metaphysical for a few of you so I'll shut up now.

There are lots of people mutually known on here for whom warm and compassionate thoughts are very much in order just now but today I'm thinking about Andrew, the man who died on the terrace just before Christmas. Whether it was an accident or murder or he just came to the end of his life he lay alone for some time at the foot of a communal stairway a few doors away from where I'm sitting now. He was a 'local character' with all those implications, but either no one knew he was there or people knew and no one helped him. They have been having trouble finding any next of kin. He was 62 and seemed only to have drinking companions, and I think that is immeasurably sad. There will always be people who we find less easy to like, let alone feel love and respect for, and it's easy for us dealing with a terminal diagnosis to forget there are other ways that life can end that we also would not choose.

OK. Enough of the sermon. Later, to counteract all this being good, I asked the Beat and J J Cale to take me dancing. They're getting on a bit now and I'm more in the flushes of middle age than the first flush of youth so we limited it to one track a piece with a sit down in between to adjust my stays and fan myself under the potted palms. I'm grateful for old dudes who make me feel still young! I've said it before but there are those who dance the vertical equivalent of lying back and thinking of England. I am not one of those...and I give thanks that I'm not a nun, ha ha!

Dying to know

It's getting harder and harder to write on here...by on here I mean my Streak with the damaged screen. I can get the screen fixed and although it's a bit ouch I can cover the cost but the point is you have to send it away and wait for it to be sent back and it seems a dopey time of year to be doing that, don't you think? I've wondered about saving up after my new carpet and getting a new 'thing' as they've stopped making this one now and I worry that repairs will get more difficult but I think I'll see how it goes eh? I'm not really at a time in my life when major investment seems a good idea!

I've never liked the idea of a prognosis...it has the air of a witch doctor's curse or death sentence to me. When I was working they made me get one to see if they could get rid of me. You could get your pension early they said, dangling the carrot of dosh. I said OK...you find out if you need to but I don't want to know what it is. There was a misunderstanding and I got the report. According to the oncologist I might have longer than I thought...short enough for the company to force my retirement but too long to get my pension. Teach me to be greedy eh?

I'm now in the 'at the most' part of what she thought I had left...and am not keen for a recalculation. My cancer was a bit more vigorous then, mind you so was my kidney and kidneys will get you just as surely as metastatic cancer, probably more so actually as they do such a vital job and have a direct link with so many other bodily systems. The most common cause of death for those with kidney failure is actually a heart attack. Your heartbeats go haywire sometimes and you think Oh, is this it? If you've ever had a panic attack you probably think you know what I'm talking about but I've had both and it's quite different actually (which is not very helpful to panickers, sorry!).

I've been told I'm dying in various ways quite a few times now. My first oncologist and his minions never made it clear and I assumed I'd get treatment and do all the right things would get well. When the treatments did all the wrong things they still didn't tell me. One of the GPs sent a palliative care nurse to see me and she asked why I thought I'd get better! Tactful huh? I went all cold and said 'Because no one's told me I won't.' And then a few months after that the demon urologist wrote some figures for me on the back of a bit of paper that turned out (accidently? on purpose?) to be a letter to the same GP saying 'this girl' (ie..me) was at 'end of life management'. I'd received a very different 'copy' of the letter and kicked up a bit of a stink and went for a long swim bristling with indignation and 'I'll show you!' But then the new oncologist said it straight out and my hair started to fall out overnight because I'd been through so much horror and no one had explained it had all actually just been to improve my quality of remaining life...and in fact optional...

A couple of years back things were very bad though, and I was told I could die at any time and I should inform people. I was in hospital at the time and I informed the people I had mobile numbers for, the people I most wanted to be there, the people I thought would want to know and care...and they were all busy and it made me very sad... and then I realised it didn't matter. That no matter how loved and grieved for someone is eventually those who miss them will die too and the people to whom they mattered also. Eventually they are just a name in a family tree or on a gravestone or maybe not even that... So many thousands upon thousands of lives come to an end on planet earth every single day and I actually find that comforting in a way...it's not like we're boldy going where no one has been before is it?

Dumb and number

This morning I give thanks that I'm finally up and showered and dressed. I wrote that and realised it was actually one fifteen but you get my drift! I called the Jobcentre first thing of course and spoke quite quickly to someone nice, polite and sympathetic person so maybe I dialled the wrong number! They said they'd get someone to call me back within the next three hours and a different nice, polite and sympathetic person did call me back within the stated time and told me...they couldn't tell me whether I needed to do a work assesment or not and had forwarded the query to Atos who would get back to them in 48hrs so to ring again after that. Both the nice polite sympathetic people I spoke to said that as far as they were aware no one who has already submitted a DS1500 should have to do anything but wait quietly at home until they pop their clogs but they would need to check my case with Atos.

It's worth looking up Atos if you're into horror stories...They are so bad they are even banned in the US! They tend to overturn doctor's and consultant's reports in favour of a physical test to see if you can do things like pick up a pound coin and a questionnaire a bit like those ones we had in girly magazines when I was a teenager to determine your personality or if 'it's love' or whatever only this is to determine if you're capable of 'some' work. The whole point of course is to put you on a lower rate of benefit so it doesn't matter to them if you are actually going to be able to get and keep a job to support yourself, although it's a tad counterproductive for the government if you lose your home before you go into a hospice and end up on housing benefit. Anyway fingers crossed for me that as far as they are concerned I'm still dying eh?

I was in a lot of pain in the night so was able to stay awake and fret some more but this afternoon I've managed to get an appointment to see someone about the bits that aren't hurting but going numb. I'm sure it was Debbie (hello Debbie!)said once that if you're hurting you're alive and having already suffered small strokes I know that, although more comfortable, numb is actually scarier than pain. As my left side has been the weakest link for so long it's both worrying and inconvenient to have my right side competing for attention in this department. I'm seeing a doctor I haven't seen before...a fresh eye for a fresh problem. Well that's my theory anyway...

While waiting for the phone to ring this morning I turned on the TV and there was a programme about a British woman who began writing to an inmate on death row and then talking to him on the phone and then getting 'engaged' before going over to meet him. Total fruit cake obviously and particularly demonstrated this by telling her daughters that he worked on a farm and the reason her snaps of him all showed orange clothes, manacles and chains were because he was in fancy dress. Now why would you think it was OK to tell your daughters you were going to marry a man you'd never met who liked to impersonate a prisoner? I mean wouldn't that be weirder than wanting to marry a prisoner? Second gratitude of the day for hearing about that dumb idea! It's going in my next letter to Kostas ha ha!

Cancer patient...Life’s too short!

When I first had my diagnosis I used to quip they should issue with us with a badge like that so you could flash it and go to the head of the queue.

When I found out life was probably going to be considerably shorter than I originally imagined I thought the prognosis conversations should go something like this...

Quivering patient: Tell it to me straight Doc, how long have I got?
Stern oncologist: Well, Mr Smith given the current progress of the disease, I should say about eighteen months, perhaps two years at best...but you must understand three days of that will be spent in a queues at the supermarket, another two listening to ‘hold music’ on the phone and at least a week looking for somewhere to park the car...

Altogether now:
ALWAYS...LOOK...ON...THE...BRI-IGHT...SIDE...OF...DEATH hum hum hum hum hum hum hum